Alzheimer's blog

Research advances, but real caring is also key in Alzheimer's effort

Many of you may have seen a New York Times article a week or two ago by Judith Graham titled, "United States Lags in Alzheimer's Support." The article talks about the recently released report from the U.S. Senate Special Committee on Aging on how the United States, Australia, France, Japan and Britain are responding to growing numbers of older adults with Alzheimer's and other dementias.

While each country has a strategy, the United States has only recently begun addressing Alzheimer's with any degree of organized effort and steam. The first national plan was launched last May when President Obama signed into law the National Alzheimer's Project Act (NAPA).

The article reported that a common focus of each country is on coordinating research more effectively, diagnosing Alzheimer's earlier and more reliably, and improving training in dementia care by medical practitioners. Each of these areas is undeniably important.

However, I'd argue that perhaps a more urgent priority ought to be on addressing and improving the day to day lives of those impacted by the disease. If effective plans aren't identified and implemented soon — plans that support people living with dementia and all of those impacted — we're facing devastating societal consequences.

These plans must undoubtedly include ways to keep people with dementia living at home as long as possible without families having to endure significant physical, emotional, and financial hardship as a result.

Plans must also include investing in ways to dramatically influence and improve long-term residential care across the United States.

And most important, as far as I'm concerned, would be a paradigm shift in the way we think about and treat individuals living with dementia. I'm speaking about the need to abolish the perception that wholeness, individuality and the need for respect somehow evaporate once a person is diagnosed with dementia.

The stigma attached to Alzheimer's is burdensome and far too many of us accept it. In other words, we discard the "wholeness" because our brains are fueled by the stigma and misconceptions that are attached to a person living with dementia.

Instead of seeing each person as whole with a disease affecting one part of their body (the brain), we tend to see dementia first and the person attached to the disease second.

And it only makes sense that the way in which people with dementia are viewed by society influences the nature of their care. If people believe that a diagnosis of dementia means that the wholeness of an individual is diminished or lost, then the quality of care and services gets devalued.

And let me address the issue of caring. Providing care to a person living with dementia often gets reduced to dressing, bathing, eating, toileting and other activities of daily living. What is absent here is the caring — an approach that isn't so much about "doing it" as it is about "being with".

Caring is about a relationship. It's about honoring that each one of us (with or without dementia) has a life history with unique interests and preferences, needs and desires, thoughts, feelings and emotions.

Caring is about truly knowing someone separate of any diagnosis. It's about opening up to the possibility that behind someone who is deeply forgetful is a person capable of more than we know.

The future offers hope that through improved organization and scientific collaboration we may be able to prevent or even cure diseases such as Alzheimer's. I support and applaud these efforts.

But I'll continue to champion ways to make lives better and more equitable for those in our communities and our society impacted right now.

A friend of mine who lives each day loving and caring for her husband with Alzheimer's captured it best. These are her words.

"It is deeply disturbing, even shocking, to learn that the United States is far behind other developed countries in addressing all of the issues surrounding Alzheimer's disease — from research to diagnosis and care. Although we might hope that our nation's leaders would be wise and compassionate enough to address this problem, it is absolutely clear to me that this will not happen without pressure from those of us who live with AD every day. If we have learned anything from the history of social change, whether it was the women's right to vote or civil rights for all, we know that change only occurs when people press their cause relentlessly on their leaders. This is a lot to ask of those of us whose hands are already full to overflowing, but this is not a choice for us. It is an imperative!"

30 Comments Posted

My husband has dementia and I have seen and very well know the pain it causes the family. As great as the States are, it's sad that they don't make an greater effort to help (in any way)to help find a cure or some relief. People with dementia should be respected as all other diseases.

R.J.Nels

September 20, 2013 11:13 a.m.

My husband has dementia from a brain tumor (removed) This is the hardest job I have ever had in my entire life. This has taken a toll on my well being. I have done things and said things that I never new I could say to anyone. I feel jilted from my marriage, and my life. While all other seniors are enjoying their golden years with their wife or husband, I am not. Don't even say the children will help, well let me tell you I don't see them to often. They say they will help but I don't see them at the front door.
They have their own lives and that is made very clear. The children of today are very selfish and only think of their own pleasures.
There is not enough knowledge, care groups and people who even give a dam about Alzheimers. Lert alone the people that have it.
Go into assisted living, nursing homes you will see just how many people have this awful, awful disease.....we need this problem addressed and very soon.....

Pat

March 16, 2013 2:30 p.m.

We live in South Texas. My daughter has Downs Syndrome and is 49 yrs old. After seeing PCPs, ENTs, gastrointerologists, neurologist, and psychologist(a total of over 2 yrs.)she has been diagnosed with progressive dementia/alzheimers. Many doctors would not accept her as a patient, and those who would were of no help - simply saying they could find no reason for her symptoms. Most information I have learned has been from the internet. Where do people with Downs Syndrome or other developmental delay go for medical sevice after they reach adulthood, let alone alzheimers? These individuals need specialized care since they often do not present with familiar symptoms and many cannot communicate well. I cannot believe that in this day and age people can be treated with such total disregard. I hope that this is not the attitude in other areas as well.

Christine

January 27, 2013 11:51 a.m.

Marilyn - you are right. My political views (left, right, or humane) have no place in deaf ears. I was responding to the comments of others and YES bringing other experiences that align with the tone of the article that invites us to be more caring, and show that care for our loved ones and others in all aspects of our lives. It is our choice to vote for politics that do not include caring for others, and we live with that. The pain of seeing a loved one go through the ailment hits everyone in equal measure, but the impact of it can be different depending on the type of society we find ourselves: caring or uncaring. Something that is in our hands to build.

Silvia

January 26, 2013 12:30 p.m.

It seems that the mandate has been given to those of us who are being impacted by AD and we push ahead to get our United States fully engaged in making changes and improvements in this journed.

hazel

January 17, 2013 1:01 p.m.

Absolutely no help in our small town, no support groups, no family. Feel guilty if I
tell friends. Sometimes when He is so angry, combative (but not physical yet), full of blame for things I did not do. . .I have private pity parties. God always is there for me. Makes me wonder how I would face it without Him. Thanks for listening.

Jo

January 11, 2013 9:41 p.m.

Sharing is so helpful and empowering to all of us, thanks. For over 10 years I have been the sole caregiver of my beloved husband because of an acute stroke. Yes, he can dress himself , looks good, and sounds wonderful over the phone to people for short conversations. However, all of my family, friends, neighbors, and doctors know the facts of the tremendous responsibility I live with and the continuous devotion and focus to him as all of you are doing. Of course, this means not taking proper care of the caregiver, you. Besides this supportive blog, the Stress Blog, Depression Bog, being Brain Donors and being involved with research for the disease, I now am making progress with a book and workbook by Dr. Amit Sood, &quot;Train Your Brain....&quot;. &quot; The meaning of pain and suffering &quot; is discussed in detail. As you are experiencing this part of life, Dr. Sood, tells us to reflect and ask yourself the &quot;meaning to you of this suffering.&quot;
It is helping me so much to the losses I feel. Suffering-what is the Meaning of all of this? We are all so busy taking care of our loved one, we forget why? Questions are coming from Dr. Sood, All credit goes to Dr. Sood and his team. I am just fortunate to read the book,
this blog, and all of you who share as well as read Angela Lunde's's expertise and caring for all of us.

Kristina

January 11, 2013 7:03 p.m.

May I suggest to all caregivers of loved ones with AD they find a PACE program in their area? PACE is a Program of All-Inclusive Care for the Elderly, providing patient centered care by a team of caring professionals. Day care, home care, respite care, medical care, therapies, medications, equipment are all provided. You must be 55 or older.
Don't look for PACE in Vermont, however, because the Medicaid funding is so low that the program, just 6 years old, cannot survive. There are over 100 patients and families who will not have the caring embrace and professionalism of a PACE team any longer!
We are going backward in Vermont, not forward.
But please do research other states and find out about this option. It may be the answer to some prayers and needs that I have read in the other posts.

Beth

January 11, 2013 1:08 p.m.

Caregivers somehow do have to become politically active about our plight. I have always said someday I will start. I have been a caregiver to my mother-in-law for over 11 years. I miss the outings our family used to share.Vacations, walks in the park, visits to our girls at college. I even miss taking her to doctor appts. (I have arranged all in home dr visits) I was denied FMLA to care for Mom-in-law because I am not related by blood. I have been married to my husband for 33yrs and I am the primary caregiver with all of the legal responsibility etc. I fought the good fight along with my union reps. I lost. I could have continued fighting but it is too much.. There are so many battles,we needed a hospital bed. Medicare will only help if the patient has a bedsore. ?I thought the idea was to prevent bedsores at all costs. Nonsense. So I am soon going to retire,maybe I will start calling and writing my representatives. May God Bless All of Us

Ann Marie

January 11, 2013 10:03 a.m.

Silvia - your political left-leaning has no place here, in my opinion. We're all in this together, trying to find information &amp; support. Politics tends to get us all riled &amp; I think we have enough to deal with without playing the blame game. I'm trying to care for a spouse who does not lend himself to &quot;caring&quot; very well, through no fault of the Republicans or Democrats.

Marilyn

January 11, 2013 9:32 a.m.

I so appreciate this blog and the ideas put forth by Angela and fellow bloggers. Dealing with memory impairment of my husband for over 5 years has been daunting. At first I wanted to make everything better. In due course I found that was not possible. He could not change, and the health care system cannot change. We tried the different medicines from Aricept to Thorazine. After awhile nothing worked. In the end I have discovered I am the one who has to change. Of course my husband needs me and after 50 years of marriage I have to get creative. When he starts to appear distressed I just reassure with kind words. I tell him I love him, take his hands and hold them. I tell him I am so glad he wants to sit next to me. Communication is not complex. We are fortunate to have a group for like minded at a local assisted living facility. I do get around 5 hours of respite two times a week, and he gets treated with socialization, exercise, and music as well as with kind words and respect. I just wish Medicare would recognize this kind of treatment and fund it.

MarieB

January 10, 2013 8:42 p.m.

Love your article! It seems to hit the nail on the head for me because I am a husband who feels, that sensitivity, gentleness and understanding that there is so much more to my wife than this cognitive memory robbing,
deteriorating brain. In the last three and a half years I have learned that there is more left than lost in her head. Everyday is full of surprises. And the most important thing to me is a positive attitude that makes for happy endings to bad situations. In a sense Ive become a comedian to my adorable, beautiful, charming darling and remarkable wife. I have been blessed with only a couple of negative situations, but have made them into learning classes for future similar situations. I could go on, but so much of what your article covered is an inspiration for me to face each day with renewed energy and positive motivation. True love can overcome any obstacles that a married couple faces.

alfred

January 10, 2013 4:20 p.m.

My dear friend's husband and children understandably are concerned about their wife/mother's safety, but my friend cries in describing how she feels about how she feels like a prisoner in her own house without her car and with family not wanting to take her out and spend time with her. They bring home the items she needs/wants instead of including her in the shopping experience. I know it is not easy dealing with the issues of her getting confused, lost, forgetting how to pay for something, etc. but I do take her shopping, coffee, etc. to give her this experience. Yes, it wears me out and I don't have to do this every day; however, my heart aches knowing her family, while trying to keep her safe, forget or don't have time to give her experiences she craves. I, too, was the daughter and daughter-in-law 25 years ago who did the same thing in keeping parents &quot;safe.&quot; I see what I did not give my parents/parents-in-law and wish I could somehow convey my experience to my friends' family.

Leah

January 10, 2013 2:46 p.m.

one more note to frustrated....the PCP cannot help or didn't help me. It was her neurologist who prescribed her meds and monitored her. I monitored as well. It will help.

Lynn

January 10, 2013 2:45 p.m.

To Frustrated: My mom was aggressive and combative also. Almost to the point of surrendering her to nursing home care. And I am unable to phathom her being in a nursing home. She is on Seroquel and Xanax and is quite manageble most (90%) of the time. Have you tried medications to help. I was terribly against the meds as well; however, I thank God for them now because she gets to stay with me. I love her soooo much. Those symptoms can be controlled.....not alleviated, but controlled.

Lynn

January 10, 2013 1:59 p.m.

My husband was diadnosed with early onset alzheimers in2004 .
Until last year he had periods of forgetfulness but all this changed in feb last year.
I am an ICU RN and thought i would sail through this easily.............oh was i wrong.
Our PCP has little or no knowledge of this disease and in august last year my husband was so delusional and haveing halucinations i had to have him admitted for 2 weeks into the Psychiatric Research Instutute in our city.
2 weeks later i brought him home and he is so aggressive at times,i have found knives under his pillow and sometimes i have been without sleep for over 40 hrs leaving me a tired worn out and no patience.
I take hime for long rides in the car,i have xm radio so he can listen to the 50's and 60's musuc he loves ,but this is now becomong difficult as he tries to open the doors and windows in the car.
I am originally from europe and see how we lag in the care available to our loved ones and also to us the caregivers.
Until congress stops talking about takers and takers we are going nowhere.
I sometimes wonder how they will react ,gee i forget they have good insurance and money also. I know not all congress feels like this but until we come together and realise we are all in this together.

Frustrated.

January 10, 2013 1:30 p.m.

As a person who was a care giver (my husband has now passed away), I could not agree with this more. It seemed to me that with the exception of 2 professionals and a couple of friends, people felt that because of his dementia, he was somehow suddenly almost a non person. It made me ANGRY. We tried to keep everything as normal for him as possible and he was able to stay at home almost to the very end of his life.
It needs to be understood that the person is still there and while function deteriorates, the humanity does not. Treating him with love and dignity was a blessing for me and I hope for him.

Donise

January 10, 2013 1:20 p.m.

I am caring for my husband with Alz. The words caring and being there for them ring so true. Watching the deterioration from day to day is difficult, but understanding and listening to what he has to say is what I do even with the same conversation repeated many times a day. When he wants to talk about going to visit his deceased parents, we talk about it in the present. When he wants to go to the farm and do chores, we talk about doing it, what is there to be done, how many cows do you milk, crops, farming in the winter time etc. He delights in the chance to talk about growing crops, watching the sun come up and go down, needing rain or too much rain etc. We only do daytime things mostly because of his mobility. He goes to the store with me, pushes the cart, holds the coupons, anything to make him feel useful. He will fold his own underwear (not like I do it, but what does it matter in the big picture)when I'm doing laundry. He needs to feel like he is helping and that satisfies him, though his attention span is short. I also hope there will be some new research done, but I won't get into politics and the blame game for results. First priority is my husband's welfare and keeping him safe, healthy and making sure he knows he is loved, many times a day. It is what it is; God bless all the caregivers-we have a tough job-but one I'll cherish &quot;till death do us part&quot;.

Linda

January 10, 2013 12:55 p.m.

WHAT A GREAT ARTICAL
PRINTING IT AND PASSING IT OUT

Terry

January 10, 2013 11:55 a.m.

My husband who has dementia comes with me to the grocery store, to church, to bible studies,to family events that are close enough to not have to stay overnight. He really loves to see people, smiles at them, and they smile at him. We go to some of our grandkids' basketball games.
By being out and about, I believe we make people aware of dementia and the normalcy of a family including our AD members in outings. We have only had welcoming smiles and conversations, from neighbors as well as strangers.
One thing I do miss, however. There is no day care facility for AD people in town. I think that would be a helpful addition to this community.

barbara

January 10, 2013 11:42 a.m.

Correction..... a disease without dignity.

JoeK

January 10, 2013 11:41 a.m.

AD is a very cruel illness that robs the person affected and those around them from aspects of joy, but it also hides a big lesson for all of us: which is that to enjoy the present, we do not need to remember it.
As I care for our loved one affected by AD, I remind myself of simply &quot;being with&quot; them right where they are ... in the present, in that moment - where they are! I cannot change the disease, but I can change how we experience it.
Stan - it is so easy to pin the failings of an uncaring system on one person, and forget that there is an entrenched love for money in the US, and that many people put money ahead of even life. Obama is not running the country alone, he has to contend at every step with a rabid and uncaring opposition: Republicans.
Personally, I would think that Republicans would be more compassionate after seeing their beloved president Reagan succumb to the illness. But no, they oppose any attempt for US society to show responsibility and care for others.
One of the KEY differences between the US and the countries mentioned in the article: Socialized and Universal Health Care. Their systems are not perfect, but for sure are more compassionate.
Until the US is willing to embrace caring for people, and the right political choices are made, things will not change. *sigh*
In the meantime, let's give our loved ones the care they need!

Silvia

January 10, 2013 11:40 a.m.

This is often a disease with dignity...

JoeK

January 10, 2013 11:38 a.m.

I completely agree about the attitudes and perception of those with dementia. But I'd go even further and suggest that includes any disabilities involving the brain. From dementia to Alzheimer's to bipolar disorder to depression, as a nation we need to provide better education about these ailments. It's the fear of the unknown and ignorance that are the root of the issue.

Mary

January 10, 2013 11:38 a.m.

I apologize for the harsh words against our President. Presidents before him did just as much if not less. Alzheimer's has been on the radar screen for years (more than 4 years ago). We ALL have to play our part. Why wasn't the NAPA law signed before Obama's presidency??

Stan

January 10, 2013 11:26 a.m.

This blog is right on target; physical &quot;care&quot; is provided professionally in many facilities, but it is the &quot;caring&quot; that provides humanness and wholeness that separates the average from the excellent. I am very fortunate to have my wife in a facility that focuses on the &quot;person&quot;, not just the functions of dressing, toiling, eating, etc.. All of us caregivers need to press our governments to accelerate funding for programs that increase the quality of staffing education, and oversight of whether a facility for those with dementia is a &quot;caring&quot; place, not a warehouse for the unfortunate.

jOHN

January 10, 2013 11:23 a.m.

What seems most missing are social outlets for those with alzhiemers. My Fran is a vibrant, attractive senior who misses most flirting and having a boyfriend. I know there are senior men out there with alzhiemers who would enjoy holding her hand and watching a movie..not minding being asked the same question repeatedly, but how to find them??? Those with moderate alzhiemers still have social/emotional needs!

Celia

January 10, 2013 11:14 a.m.

You are far to kind to Obama...he actually signed the NAPA law into effect in Januay of 2011 not last May...He has been dragging his feet ever since...He is the most pathetic of the Presidents on doing anything for Alzheimer's...He said on national TV after signing the bill that he was making it a National priority...did he go to sleep...his funding is even worse then under Bush who cut the funding for the first time in decades...

Stan

January 10, 2013 11:12 a.m.

I totally agree. As soon as someone says they have any type of dementia, people look at you differently. We, as a nation need to come together to help solve the problems of dementia, help caregivers who give SO much of themselves, and continue the work on trying to find a cure.

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